Needs and preferences of breast cancer survivors: A cross-sectional survey.

Abstract

147 Background: The Institute of Medicine recommends development of cancer survivorship care models that are patient centered. We designed a cross-sectional survey to determine the medical and psychosocial needs and preferences of breast cancer survivors. Methods: We identified a random sample, stratified by age and chemotherapy usage, of 600 women from MN, WI, and IA, ages 18-99, within 1-5 years of diagnosis of stage 0-3 breast cancer and seen at our institution. Results: We received 329 surveys (response rate 55%). Respondents were a mean age of 58 years (range 26-89) and a mean of 3.3 years from cancer diagnosis (range 1.2-5.4). 96% were white and stage distribution was: 15% stage 0, 35% stage 1, 32% stage 2, 15% stage 3, and 3% missing. Treatment included mastectomy (60%), lumpectomy (40%), radiation (61%), chemotherapy (55%) and hormonal therapy (50%). Most common treatment-related sequelae were neuropathy (38%), chest wall or arm pain (27%), and lymphedema (26%). Over half (52%) report worry and 45% report fatigue as a problem in the past week. 74% stated that their medical needs were met, whereas 49% said their psychological and spiritual needs were met (p<0.01). 68% understood the follow-up plan after treatment was complete. Perceived barriers to follow up care were anxiety (30%) and lack of coordination (10%). When queried about post-treatment care, the following aspects were considered important (% of patients ranking ≥7 on scale 0-10: 0=not important, 10=very important): breast/chest wall exam (88%); screening for osteoporosis (71%), colorectal cancer (69%), and heart disease (65%); educational materials (64%); mammography (63%); physical therapy (61%); diet and exercise counseling (60%); and complementary/alternative medicine information (53%). Less important were psychology (44%), gynecology (43%), chaplain services (35%), support groups (32%), social work (20%), and infertility experts (4%). 60% expressed interest in attending a survivorship clinic. Conclusions: This survey provides unique data on breast cancer survivors, and efforts should be made to optimize medical and psychosocial care in line with their needs and preferences. These results will be imperative in designing a wellness and survivorship clinic.